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Preparing to die well

By Karen Dandurant

Preparing to die well

Some day, every one of us is going to die, so why is that topic so difficult for most people to talk about?

A book, “Being Mortal,” written by Dr. Atul Gawande, explores that question. A new PBS documentary, based on the book, follows patients as they go through the process of dying, with a close look at the interactions between the patients, their family members and the medical community.

“Putting this into a movie lets people see what end-of-life care can mean,” said Dr. Keenan Al-Hojerry, one of the physicians depicted in the film. “Doctors look at death as a failure, but really, it is a part of living. As physicians, we are trained not to recognize that, but we must, to be fair to everyone involved.”

The staff of Portsmouth Regional Hospital will tackle these difficult questions and emotions in a three-part speaker series set for the spring. All lectures are free and will be held at the hospital from 7 to 8:30 p.m., in the hospital classrooms at 333 Borthwick Ave.

On April 18, Being Mortal will be the first topic. Presented by Cristina Hepburn of Beacon Hospice, the program is intended to help clarify issues surrounding quality of life and death for patients, family and physicians.

On May 10, the series continues as Dr. Sarah MacDuffie presents a talk about Advance Care Planning, with the focus on ways to have this much-needed conversation.

Finally, on June 2, “Healing Through Grief and Forgiveness” will help with final resolution of what can be a complicated relationship when the topic of impending death is involved.

Most of us probably think we know how we would prefer to die. Dying peacefully at home in our bed is a common goal. The questions that needs to be asked are when does quality of life become the deciding factor? When is it time to say enough when it comes to continuing treatment past the point of effectiveness or the possibility of a cure? When is it appropriate to have the conversation, and with whom?

I would argue that any time is the right time,” said Dr. Sarah MacDuffie, medical director of Palliative Care at PRH, and medical director at the Edgewood Centre in Portsmouth. “I think the more discussions with family about your values and your wishes, the better prepared they will be if the time comes when you cannot choose for yourself. And do it now. Waiting until there is a significant illness changes things and makes the conversation harder.”

If the conversation is not had early and often, MacDuffie said it can become the elephant in the room during a health crisis.

“The patient doesn’t want to discuss it because they don’t want their family to think they are giving up,” MacDuffie said. “The family doesn’t want to talk about it because they don’t want the patient to think they are giving up on them. So everyone should have the conversation often. Do advance directives, but that can’t be the end of the talking.”

Tracy Searing, a licensed social worker at Rockingham Visiting Nurse Association and Hospice, an affiliate of Exeter Hospital, said statistics show that only about 30 percent of people coming into hospice care have advance directives in place.

“As social workers, we start taking care of that from day one,” Searing said. “Most of the time patients do not realize how simple it is. I tell them I can have this in place in five minutes. Our goal for hospice patients is to have an advance directive the day of admission so we can be sure to honor the patient’s wishes.”

Searing said her family already has advance directives, even her adult children.

“I do not want to have this discussion when the question between my husband and I is whether or not to put my 18-year-old on a feeding tube or a ventilator,” said Searing.

Before 2014, Searing said there was no legal component in place to allow a family member to speak for another who could not speak for themselves.

“It would end up in court,” said Searing. “If there was no family agreement, the court system made the decision and that is not right. Now, a surrogate can be appointed to carry out the wishes.”

Preparing to be mortal is a two-part process.

MacDuffie said the person must be clear in his or her own thought processes about what they want to happen. Second is addressing the beliefs of the physician.

“I had one doctor tell me that death is the enemy, meaning we had to do everything, offer everything to keep death at bay,” MacDuffie said. “We need to offer one more test, one more treatment. I have watched this person’s thoughts change. We need to ask the question of whether or not this new intervention makes things better for the patient. Physicians need to get that we are going to die and that sometimes that is the best answer.”

“It completely goes against all of our training,” said Dr. Keenan Al-Hojerry. “This is very difficult for doctors. We are not taught to deal with death, so we don’t. We don’t know how to deal with the patient who is dying.”

Al-Hojerry said doctors struggle. He said life and death are like a moving stairway and it’s important to let everyone have a smooth ride no matter where they are along their path.

“Do we hold their hand, look them in the eye,” he said. “We tend to pick the least painful approach but may not be doing the best we can for our patient that way. Most patients, faced with death, know it on some interior level. They need a passionate caregiver who will not let them go through this alone.”

“The same goes for family members,” MacDuffie said. “We need to be able to tell them that we can try something, but it will not make a negligible difference, so they can decide if there is worth, if it is what their family member would want.”

And while most of us have an ideal vision of how we would like to die (peacefully, at home), we don’t give much thought about how to achieve that. Sadly, we aren’t well-informed of our options at end of life, and, if our wishes aren’t solidified in writing, our loved ones bear the burden of making crisis-driven decisions about our end-of-life care. As a result, many of us will experience medical interventions that in the end will not prevent our death and can make the process more difficult.

Instead, Dr. Al-Hojerry recommends paying attention to the setting: pull up a chair beside the bed, lower the bed railing, and have a conversation at eye level with the patient.

“Some patients respond well to a light touch – putting your hand on their arm or holding their hand can help them feel grounded when hearing frightening news,” he said. “Don’t be afraid of silence. People need time to process, and may ask repetitive questions. Give them time. It may be a few days before they feel able to ask questions. Know that they will likely experience the grief cycle of denial, anger, bargaining and depression before they come to acceptance.”

We can’t stop death, nor according to the laws in most states, can we help it move forward faster.

“You only die once,” Al-Hojerry said. “You had better do it right. That means being prepared to have a good death, so when it comes, you are ready.”

Complete Article HERE!

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The Long Walk Away From My Son’s Grave

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The Long Walk Away

The hardest steps I ever took happened 17 years ago, on a hot Thursday afternoon in early September, as I walked away from my son’s grave for the first time. The cemetery smelled of juniper and baked dirt, and as my husband Jason and I stood arm-in-arm, readying ourselves to go, I felt the heat rise up from our ankles. I remember how my body slowly lurched forward as we steered each other toward the car while the hot sun filled the high desert cemetery with light. The wind, an almost constant presence out there, was still as I made my way along, feet dodging big clumps of cheatgrass along the way.

Just two days earlier, we’d sat huddled together at the mortuary, “making arrangements” as they called it, which really meant having to tell someone else about how our lives seemingly and without warning came to a halt as Dylan’s heart stopped beating in utero, a week past his due date. He was stillborn. We’d walked out of the hospital carrying a small purple memory box rather than our 10-pound son.

The day we buried Dylan, there were reminders all around me of how the forces of nature could alter everything. Close to the cemetery, outside our then-home of Bend, Oregon, the elevated peaks of Three Sisters weren’t the gentle fairy tale their name suggested, but the result of plates that had shifted deep in the earth, during a process called subduction. Layers of crust had crashed into each other in a fiery show, perhaps tens of thousands of years ago, creating the widest and longest fault lines in the earth.

Subduction zones are places where great trauma lies. And here I was, all these years after the mountains formed, standing in their shadows in the middle of my own destruction. Enveloped in grief. Loss all around me.

***

Dylan’s in every step I take as I walk away from his grave. He’s all I can think about as I recall the sound that came out of me when I held him for the first time, “Oh!” His still warm body is wrapped in a white cotton blanket and he is wearing a little white onesie with colorful baby-sized hand prints across it. At first glance, his face looks reddish, and I can see that it’s turning blue, but I am not seeing what he is right now. My eyes are soaking up what he should have been. I can see the slight curve of his nose and the shock of dark hair on his head. His eyes are closed, but I know the sky-blue they would otherwise be. He feels light in my arms as I hold him close against my own skin, and as I study him, I am quiet for a while. He’s brand new and so familiar at the same time.

Perhaps there are still other people in the room, or maybe not. Everything and everyone else recedes and all I see is the top of his head and all I hear are words that come pouring out of some deep recess: “I love you so very much. All the way to the moon and back and around the world three hundred and sixty seven times.”

“He’s brand new and so familiar at the same time.”

Some words I say out loud, and some words I don’t need to give voice to. I know that he hears them. It is an ancient wisdom. I tell him about his family and about his sister. I tell him about his room and our cats. I tell him that we all love him. All this time, I am holding my son for the only time we will be together on this big blue planet. I know that this is something I will never get back. I know I have to remember this fiercely. It will all be over far too soon.

Later, when I can reflect on the funeral, I remember our family and friends dropping what they’re doing to stand with us. I remember our daughter sitting on the ground with friends, and their three little heads bowed together while playing with dolls. I remember visually gathering some of their innocence, and it feeling like something close to hope.

As we drive along the dirt road that leads out of the cemetery, I slump down in the seat. By the time we reach the fence, as it will happen every single time, perhaps for the rest of my life, my tears water the desert air. Even as the miles pass and we make our way back to Bend, toward our families and the small gathering at his grandparents’ house, inside my head, I stay in the cemetary where my son is buried, my heart turned inside out.

***

After Dylan’s funeral, we walked back to our apartment and into a life that the three of us no longer fit into. For more than a year, we did our best to go through the motions—we worked, we took short family vacations to the coast and southern Oregon, and we tried to dodge the grief that followed us. Then one day, our 4-year-old daughter asked, “Mom, we used to be so happy, huh?” I nodded. “And then Dylan died and now we’re all so sad.” Six words leapt at me. “When will we be happy again?”

Up until her brother’s death, our lives had been full of quiet walks down a gravel-filled road on the outskirts of Sunriver, where we scouted ospreys, baby hawks, and porcupines. “Look,” I’d say while pointing out some amazing new discovery as we wandered the edge of the Deschutes River. We lived in a sweet log cabin that Jason’s Aunt Jennifer built with her own hands. At night there was a gathering of stars above us as the clearest moon lit up the sky. It was by all accounts an idyllic life and for her, it was a gentle childhood surrounded by a forest of towering but friendly ponderosas and jack pines.

Now I felt like we’d all been catapulted headfirst into the kind of neighborhood you didn’t want to be in after dark. We’d never been here before, didn’t know where we were going, and from what I could see, there weren’t any road maps. Clearly we’d lost our bearings. How could we go from such a well-crafted “before” to such an unimaginable “after”?

“How could we go from such a well-crafted ‘before’ to such an unimaginable ‘after’?”

That fall, my daughter could have entered pre-school, but the thought of sending her away, even just for a few hours, was inconceivable to me. She was my reason for getting up and facing each day. When I wanted to hole up and stay home, she would cajole me to take her to the park so she could swing higher and higher. She pointed to birds and flowers around our neighborhood and made me see beauty again. “Look at that!” she would say. And on the days when I could barely drag myself out of bed in the morning, she would be there. “I love you,” she would remind me. All those lessons I had poured into her, came right back to me when I needed them most.

And all the time, those six words pulled me along, inspiring me to keep trying to find something that resembled happiness in this new form. We moved back to southern Oregon and eventually made our way back to Ashland, where bright red flags lined Main Street and the lush foothills around us offered a sense of peace. I didn’t know it back then, but we were charting our own map, however imperfect. We threw ourselves into volunteer work, discovering in the process that fighting for the rights of low-income people—for better access to health care, economic justice, and independent media that tells the stories behind the issues—felt especially fortifying.  We rooted ourselves in southern Oregon until it felt like home. Healing crept up on us, not all at once, but in tiny flashes of kindness. Two more daughters were born and grew.

Above us, the moon kept rising and lighting up the darkness. Seventeen years passed.

***

Here’s the thing that nobody else will tell you about grief. Sometimes, however uncomfortable it is, you just have to sit with sadness for awhile. Sorrow waxes and wanes. You can ground yourself in simple things while time drags along; I recommend the taste of a fresh, ripe peach, listening to the sounds that a hummingbird’s wings make when they visit the feeders, and love notes penned to a small daughter, perhaps added into a brown paper lunch bag with a funny little drawing on one side.

“Sometimes, however uncomfortable it is, you just have to sit with sadness for awhile.”

The sorrow that most of us want to flee helps spit-shine the lens, until we see things more clearly, feel things more deeply. And perhaps, in its wake, grief may even beget a baffling richness.

Complete Article HERE!

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Who Should Have The Right To Die

Doctor-assisted dying continues to be hotly debated in the United States, but the ideas – and specifically the words – used to support it have evolved in fascinating ways. Over nearly a century, there has been a shift away from terms related to death towards a focus on autonomy and dignity, drawing in no small part on the ideas of the 19th-century English philosopher John Stuart Mill.

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Dying Better, Even If It Means Sooner

Delaying death with excessive, expensive end-of-life care often does more harm than good.

Focus on the simple things, not extraordinary measures
Focus on the simple things, not extraordinary measures

By

Life expectancy in the United States has increased by 30 years in the last century. Despite our longer lives, many Americans continue to fight death’s inevitability in ways that are costly socially, economically and spiritually. Our over-reliance on medical “miracles” is causing us to throw more and more money at the final year of life rather than grapple with the difficult – but ultimately more gratifying – work of approaching death more willfully by removing the sense of crisis and making the most of the moments that remain.

Defying and delaying death often remains the focus of many care providers even when patients reach their 80s, 90s and 100s. These individual decisions add up to the single greatest expenditure in the national health system: Care in the last 12 months of life accounts for over 25 percent of total expenditures for both Medicare and Medicaid. And while some studies have argued for cost savingsassociated with hospice care, others show cost neutral effects of engaging hospice in the last months of life, depending on how cost is measured and over what period of life. Meanwhile, a number of states are passing aid-in-dying laws, which will have moral, social and economic impacts, but the bills are simply directed at ending suffering; the changes in dying made possible by such laws (notably in Oregon) have not been the subject of economic analysis to date.

In short, driving down end-of-life costs will be slow because these costs are sustained by medical practice and patient choice, both social and behavioral practices subject to slow change. While this level of spending is unsustainable, there are greater costs – constantly fighting against death’s inevitability is also deeply unsatisfying.

Looking back, many sons and daughters I have worked with regret having encouraged a parent to undergo a hip surgery. Spouses regret pushing for their loved ones to be intubated, and many patients struggle to balance the suffering with the life-prolonging effects of their treatments. Such regrets are the outgrowth of an approach to death that is focused on delaying death rather than being present and accompanying loved ones as they are dying. Accessing death-delaying treatments often comes at the expense of easing discomfort and being intentional about the nonmedical ways we can help our dying loved ones.

End-of-life laborers are very clear about limiting the extraordinary measures some of their patients allow in their own lives. Their plans, shaped by their work with the dying, give clear direction about how they want to live: deliberately and without much medical intervention as they encounter illness and disease later in life. They sometimes mourn the life-extending measures that can prolong life at a very low quality and instead encourage loved ones to be present as often as possible, continue routines, tell stories, touch our dying loved ones and find ways to meaningfully connect, like looking at photos, being together in nature, listening to music or sharing a favorite food.

Although our medical advances are partially responsible for our longer years, when we begin parting with life, many end-of-life laborers remind us to focus on the mundane, not the extraordinary. They encourage family members and patients themselves to pause before pursuing treatments, to be as deliberate and purposeful about planning as possible and to enjoy those things that have always delighted or engaged them for as long as possible.

The friends and family members who are most proud of how they helped their loved ones often talk about little tokens: a friend clipped part of a favorite flower so her friend could smell her yard one more time; a daughter got the quilting club to gather in the hospice room; a son dug up a favorite book and read and read and read until he was certain his dad could no longer hear his voice.

Obviously families who seek life-prolonging measures do so for more moments with their loved ones. Unfortunately, aggressively delaying death often becomes the focus of the final weeks and days. Pursuing significant medical care often distances us from our loved ones: time spent in waiting rooms, surgical units and follow-up appointments, rather than watching the geese take off over a lake, taking that final trip to one’s homeland or reconnecting with friends who have been distant.

As more of us live longer and die slower, the challenge for many Americans will be to avoid rushing toward solutions and to live, sometimes quietly and uncomfortably, in the shadow of death’s certainty. End-of-life experts have taught me that recognizing limits might save us from some of the real damage we do to each other – asking our elders to fight on too long, to endure too many procedures and tests and surgeries and to spend too much time in the hospital instead of at home or in the garden – or holding the hand of someone who loves them.

Complete Article HERE!

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For loved ones, scattering of ashes becomes a healing journey

By BOB TEDESCHI

Scatter_ashes

On a January afternoon in 2013 when an oncologist first raised the possibility of Evan Scofield’s death, his mother Susan Scofield half-jokingly asked what she should do with his body. He was 25 at the time.

“Not my body, my ashes,” he told her. “Scatter me.”

He died six months later at age 26, and over the past three years his mother has honored that wish, enlisting a group of his closest survivors to scatter his ashes, if not to the four corners of the earth, something close to it.

They were also asked to write about the experience, and their tributes are collected on a website, ScatterEvan.com. It’s a testament to his life, of course, but it testifies, in particular, to a remarkable posthumous gift he arranged for his loved ones.

“I told him what I thought I’d do with all of his ashes and he said ‘No, not that,’” Scofield recalled during a recent phone call. “He said ‘You go to Scotland,’ because we’d talked a lot about hitting the Scotch distilleries together. With everybody else, his attitude was that they would know where to go.”

They did.

Evan’s ashes have found their way to the Ganga River, a rain-soaked garden in Kyoto, the Gulf of Alaska, a fjord in Iceland, and a lake on New Zealand’s south island.

Less exotic spots have also been quietly consecrated: a burger joint in LA, a Weezer cruise, the American Museum of Natural History.

“He was a very unusual person,” as his mom put it.

“He kept saying every year from age 7 on that we should go to Thermopylae for vacation. We said stop it; we’re not going to Thermopylae,” she said. “He loved anything to do with the ocean, and Vikings, and ancient history. Epic literature was his thing.”

He also had a thing for narwhals, so his friend Marc Seedorf saw to it that some of him ended up in Iceland in November 2014. Seedorf was joined by Evan’s close friend Alexander Maxwell and Evan’s partner of seven years, Ursula Strauss, who was a unifying force in the project.

Seedorf’s description of the experience ended with this passage:

“It was the most beautiful landscape I had ever witnessed. A house sat on the hillside with no view of another building in sight. We spent all day hiking the surrounding hills, learning, drinking fresh glacial water. After leaving one of Evan’s Buddhas on a window sill in the house, we found a spot on the shore for the scatter. I poured the ashes of my best friend in my hand and let him go into the water. All that I wanted when we were exploring Iceland was for Evan to be there to tell us about the Vikings that had once traveled those seas. To watch him climb some rocks he probably shouldn’t be climbing and somehow manage to come away unharmed. To sing us songs and translate the story of the northern lights at night. I feel very overwhelmed as I write this. With sadness and nostalgia. With anger. But I will be forever grateful that even after he was gone, Evan still made sure I was part of his adventure.”

There is danger, of course, in making too much of one community’s approach to memorializing a loved one. And Scofield does not for a moment suggest that this group’s decision is somehow prescriptive for others. Few would have the means to raise $45,000 in donations for the project, as they did, for instance.

And yet.

n ways, the “Scatter Evan” project embodies a sentiment that appears to be gathering momentum in the broader popular culture, outside the context of death. For the past decade or so, psychologists and philosophers have promoted the wisdom of buying experiences, not things, given the often deeper and longer-lasting emotional impact that experiences can offer.

Rather than leaving behind a monument or objects that might offer solace to survivors, ashes have become a conduit for a more experience-based connection to those who have died.

None of these things necessarily change the trajectory of a survivor’s mourning, said Holly G. Prigerson, who teaches and researches grief and end-of-life care, among other things, at the Weill Cornell Medical College.

“People always ask about burial rituals and whether they’re therapeutic and promote bereavement adjustment or not,” she said. “Sometimes, as may be the case here, how surviving loved ones memorialize the deceased is more an indicator of their adjustment than a promoter of it.”

Scofield said the project “gave us another focus and another form of communion with a group of people. Even for those who just donated money, it gave them an opportunity to feel like they did something, so they felt like they weren’t just completely powerless.”

The official final scatter will happen this summer, at the family’s summer gathering spot in Cape Hatteras. They will build a pitfire on the beach and throw in the rest of his ashes, his urn, and a Buddha statue Evan had been carving. He asked her to burn it, just as he asked her to let go of any personal belongings that might become a shrine, as he put it.

An unofficial last scatter will follow at a later date. “We’re holding a little bit left,” Scofield said. “We’re going to Thermopylae.”

Complete Article HERE!

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Sexuality – Breaking the Silence

By: Anne Katz PhD, RN, FAAN

sexinoldage

Sexuality is much more than having sex even though many people think only about sexual intercourse when they hear the word. Sexuality is sometimes equated with intimacy, but in reality, sexuality is just one way that we connect with a spouse or partner we love (the true meaning of intimacy). Our sexuality encompasses how we see ourselves as men and women, who we are attracted to emotionally and physically, what turns us on (eroticism), our thoughts and fantasies, and yes, also what we do when we are sexually active, either alone or with a partner. Our sexuality is connected to our image of ourselves and it changes over the years as we age and face threats from illness and disability and, eventually, the end of life.

Am I still a sexual being?

Illness can affect our sexuality in many different ways. The side effects of treatments for many diseases, including cancer, can cause fatigue. This is often identified as the number one obstacle to sexual activity. Other symptoms of illness such as pain can also affect our interest in being sexually active. But there are other perhaps more subtle issues that impact how we feel about ourselves and, in turn, our desire to be sexual with a partner or alone, or if we even see ourselves as sexual beings. Think about surgery that removes a part of the body that identifies us as female or male. Many women state that after breast cancer and removal of a breast (mastectomy), they no longer feel like a woman; this affects their willingness to appear naked in front of a partner. Medications taken to control advanced prostate cancer can decrease a man’s sexual desire. Men in this situation often forget to express their love for their partner in a physical way, no longer touching them, kissing them, or even holding hands. This loss of physical contact often results in two lonely people.  Humans have a basic need for touch; without that connection, we can end up feeling very lonely.

Just talk about it!

seniors_menCommunication lies at the heart of sexuality. Talk to your partner about what you are feeling, how you feel about your body, and what you want in terms of touch. Ask how you can meet your partner’s needs for touch and affection. The most important thing you can do is to express yourself in words. Non-verbal communication and not talking are open to misinterpretation and can lead to hurt feelings. Our sexuality changes with age and time and illness; we may not feel the same way about our bodies or our partner’s body that we did 20, 30 or more years ago. That does not mean we feel worse – with age comes acceptance for many of us – but we do need to let go of what was, and look at what is and what is possible.

The role of health care providers

Health care providers should be asking about changes to sexuality because of illness or treatment, but they often don’t. They may be reluctant to bring up what they see as a sensitive topic and think that if it’s important to the patient, then he or she will ask about it. This is not good. Patients often wait to see if their health care provider asks about something and if they don’t, they think that it’s not important. This results in a silence and leaves the impression that sexuality is a taboo topic.

Some health care providers are afraid that they won’t know the answer to a question about sexuality because nursing and medical schools don’t provide much in the way of education on this topic. And some health care providers appear to be too busy to talk about the more emotional aspects of living with illness. This is a great pity as sexuality is important to all of us – patients, partners, health care providers. It’s an important aspect of quality of life from adolescence to old age, in health and at the end of life when touch and love are so important.

Ask for a referral

If you want to talk about this, just do it! Tell your health care provider that you want to talk about changes in your body or your relationship or your sex life! Ask for a referral to a counselor or sexuality counselor or therapist or social worker. It may take a bit of work to get the help you need, but there is help.

Complete Article HERE!